Monthly Archives: January 2014

There is a non-profit, charitable foundation devoted to funding research and raising awareness about the dangers of fluoroquinolones and fluoroquinolone toxixity. It is called The Quinolone Vigilance Foundation (the QVF) – www.saferpills.org.

Following is some information about the QVF:

History and Purpose

The QVF was founded by 4 floxies in 2009. Their goals were to review the existing scientific literature that addressed adverse reactions to fluoroquinolones, recruit and network medical researchers, and stimulate new research into fluoroquinolone toxicity. It became apparent that a national non-profit was necessary to establish the professional credibility of the QVF and so that the QVF could act as a vehicle to raise the funds needed to drive scientific research. The QVF exists to stimulate and fund university-level peer-reviewed research that will inform the medical community about severe adverse reactions to quinolones/fluoroquinolones.

Since April, 2012, the QVF has been registered as a charitable organization, it has received its EIN from the IRS, registered with the State of New Jersey (where the QVF is headquartered), registered with the proper federal agencies, and written up and filed Articles of Incorporation. In April 2013, the QVF filed for 501(c)(3) status with the Internal Revenue Service, where its status as of 01/29/14 is pending. The QVF can operate as a non-profit while its 501(c)(3) status is pending. It is anticipated that receipt of the QVF’s 501(c)(3) status will be received in 2014.

While the QVF does do advocacy, the main focus of the foundation is research. When research contracts are entered into by the QVF, the QVF officers sign confidentiality agreements, which note that the research cannot be discussed publically. For this reason, much of what the QVF does is behind closed doors. The officers of the QVF ask for understanding among floxies in realizing that even though much of what goes on in the QVF cannot be public, much is going on. Per Rachel Brummert, Executive Director for the QVF:

“My day includes talking to the medical community, soliciting other major universities to do studies, reaching out to other agencies, making phone calls and doing e-mails. We give up our weekends, evenings, holidays, etc. to do our jobs, and we do not get paid for what we do. In everything we do, we keep in mind that the floxie community relies on us, and we are passionate about what we do for that very reason. We understand that it is frustrating that we cannot share more about what we do. We share that frustration, however, we do it to protect the community and the people we work closely with. Unfortunately, research is slow, and expensive. We are fully committed to doing what is necessary to fully fund the studies we initiate so that we can answer the questions of “why did this happen” and “how can we fix it”. The floxie community deserves those answers.”

Though the QVF is primarily focused on research, some advocacy and outreach activities have been conducted.

In November, 2012, the QVF partnered with another foundation to do a 5k walk/run, where awareness materials such as rack cards, wrist bands, awareness cards, etc. were distributed.

In November, 2013, Matt Sorrell, husband of QVF Treasurer Christina Mathos-Sorrell, ran the NYC marathon on behalf of the QVF. Matt was able to raise money for the QVF and increase awareness about fluoroquinolone toxicity through running the marathon and collecting donations.

In December, 2013, The QVF did an online auction, put together by Executive Director Rachel Brummert and QVF fundraising director Michelle Fewer.

The QVF plans to hold the events listed above annually, and discussions are being conducted about other ways to raise funds.

The founders of QVF reached out to fellow victims of fluoroquinolone toxicity to establish a presence in the online community. The board of directors was created, and ambassadors/advocates from all over the world began volunteering to help. Currently, the QVF is an international organization represented in six countries: the United States, Canada, Ireland, the United Kingdom, Belgium, and Australia.

In an ideal world, fluoroquinolones would be reserved for use in life-or-death situations. Until then, and until medicine can be completely customized and individualized, these groups of people should avoid fluoroquinolones:

A Floxie friend called me last week to say goodbye. She had received a terminal prognosis from a couple of doctors and she was going into hospice care for her last hours/days/weeks/months on earth. She is in her early 50s. She has been dealing with fluoroquinolone toxicity, and some compounding issues that stemmed from being simultaneously administered Cipro with steroids, for about 13 months. She has become so weak, so poisoned, and so overwhelmed physically by her illness, that she can’t fight back any more. She will not last much longer.

I don’t know what to say. I don’t know what is appropriate in this situation. I wish her peace. I hope that she and her loved ones get the opportunities to say what they need to say to each other. I hope that she feels loved. I hope that she isn’t in pain.

I really, really, really wish that none of the physical and mental deterioration that she has experienced over the last 13 months had happened. There is nothing that is okay about her dying from a fluoroquinolone shutting down her body. It’s tragic. Absolutely tragic.

She was healthy, happy and beautiful 13 months ago.

Now she is going into hospice care.

It is just so, so sad.

I don’t think that anyone ever knows the right thing to say when faced with death. Concentrating on peace, love and coming to terms with the situation seems like the best, and right, thing to do. But, in our conversation, she did mention that she wished that she had the strength to tell her story, to speak out against those who poisoned her, and to warn others about the deadly combination of fluoroquinolones and steroids. She doesn’t have the strength to do so. But I do. She, and all of the other people who are hit hard by fluoroquinolone toxicity, are the reason that I do what I do. I write for them. It’s not about Lisa not being able to dance in heels for a while. It’s about those who lose their health, those who are in chronic pain, those who are too weak to fight back, and those who die as a result of fluoroquinolones. I write to scream about their pain and their losses. There is nothing that is okay about their pain (or my pain, as trivial as it is in comparison). There is nothing that is okay about body-wide shut-down and death being the result of taking an antibiotic.

I also write on Floxie Hope to let people know that their path is not necessarily one of terminal illness. Many people make a full recovery. I hope that everyone reading this recovers. But it would be false and disingenuous to pretend like everyone recovers. Not everyone does. Some people die from fluoroquinolone toxicity. It is tragic and it is wrong.

I hope that this little tribute to my friend brings her some peace and happiness. I acknowledge her struggle, her pain and her sickness. I don’t know what I can do to stop the horrible tragedy of people being hurt, and dying, from fluoroquinolone toxicity. But speaking out is a step. It is something that I am capable of doing and I hope that it helps.

May she be at peace. May she know, really truly know, that she is loved.

Getting floxed was the most difficult thing that I have ever gone through. Getting sick, and all of the struggles that went along with it, was difficult physically, mentally, emotionally and spiritually. To have my body suddenly fall apart was scary. To have my mind fall apart along with my body, was terrifying. Getting floxed tore down parts of me that I thought were solid. It took what I thought were my greatest strengths, my physical and mental capabilities, and made them my weaknesses. I had to find strength in a part of myself that I previously didn’t know existed, my spirit, in order to make it through. Through trial and error, perseverance, dumb luck, support and probably some other factors, I made it. I have recovered.

Getting floxed was also the most traumatizing thing that I have ever experienced. It took me longer to get through the PTSD and shock of getting sick/poisoned than it took me to get through the physical or mental deficiencies. The emotional turmoil involved in getting poisoned by a perfectly legal, prescription antibiotic was, well, traumatizing. But I think that I have recovered from the trauma as well.

As life has gone on, as it has returned to normal, as I have gained my capabilities back and gotten over the pain and shock, I have started to forget what it was like to be sick. I have forgotten the pain. I have forgotten the desperation. I am forgetting the fear. Even the anger is leaving me.

It’s odd to forget. It’s odd to not remember a big chunk of my life (from December, 2011 through August-ish, 2013). It’s odd that something that defined my life is leaving my consciousness. It’s odd that I am forgetting what helped me and what hurt me. It’s odd that I am even forgetting the trauma, because it isn’t traumatic for me anymore. I have recovered and it’s just… gone.

It went away. All of it. Even the memories.

It’s perplexing to lose the memories of my floxing. I feel like I need those memories in order to do what I do – write about fluoroquinolone toxicity, advocate for change in how fluoroquinolones are thought about and administered, empathize and offer advice to those who are struggling, etc. But the memories are fading. They’re leaving.

It’s healthy to forget, I’m sure. I’m sure that it’s best for my mind, spirit and even body to forget the pain, suffering and fear. It’s best to let it go.

But it is odd to lose my memories. Of course I don’t miss the pain, fear or anger. But I’m a little worried that in losing my memories I will lose my passion, my drive and my purpose. Advocating for change in the policies surrounding fluoroquinolones is important, and I intend to keep doing it. As time goes on and my memories fade, I fear that I will lose focus and that I will forget my passion.

I wish you all healing. I wish you all hope. I wish you all forgetting. May you forget the pain. May you forget the sickness. May you forget the fear. May you forget the anger.

But I encourage you to not forget the fight. It’s a good and worthy fight. Though I may forget how it felt to go through getting floxed myself, I’ll try to remember that there is nothing that is okay about other people going through it. I will keep in mind that people are suffering needlessly – and that’s wrong. I will keep in mind that these drugs are being given to innocent children and that they are being hurt. It’s horrifying and it needs to stop. I’ll keep fighting. And I’ll keep reminding myself about why I fight through listening to your stories.

As you recover, when you see that light at the end of the tunnel and you know that a full recovery is on the horizon, please write down your story and, if you want to share it, send it to me to publish on Floxie Hope. If you don’t write it down, you will forget it. That’s not an altogether bad thing, but other people can benefit from your wisdom if you write down your story while it’s still fresh in your mind.

Forgetting the pain and sickness is healthy. May you get well enough to let your floxing be a distant, faded memory. The fight is different from the sickness. You can forget about the sickness while still remaining in the fight. IMO – it’s excellent to do both.

This isn’t an altogether bad thing. I’m overwhelmed because so many people are reaching out to me to ask me questions about fluoroquinolones. This is great – it means that word is getting out about the dangers of Cipro, Levaquin, Avelox and Floxin. It means that people are reading what I write and connecting their pain and/or chronic illness to their prior use of fluoroquinolones. Though it’s scary and infuriating for anyone to realize that they have been poisoned by a prescription antibiotic, knowledge is power and I’m pleased to be part of anyone putting together the pieces of their health puzzle, and realizing the cause of their pain and suffering.

There are a lot of you who I need to get back to. There are multiple emails in my inbox that need responses. You deserve a thoughtful response and I promise that I’ll get to you as soon as I can. I’m trying to answer FQ related questions and emails, while also trying to keep my job, maintain my relationships and continue to write. It’s hard to balance it all. I’m not doing a very good job at finding a balance right now. I’m overwhelmed.

My main goal in starting Floxie Hope was to help people through their Floxing experience. Part of doing that is responding to people when they reach out to me. I will get back to all of you. I promise, I will. I really am sorry for my less than timely responses. If it has been more than a week and I haven’t responded to you, please re-send me your email – or just send me a note saying that you’re waiting for a response.

When I do respond to your emails, please keep in mind that I really don’t want people to think of me as an expert. I’m doing my best to put the pieces together. I’m doing my best to be right. I’m doing my best to rely on credible research. But I have been wrong about many things in my life and I don’t want people to take what I say as gospel. I promise you, I am quite fallible. (I’m right about fluoroquinolones being dangerous, over-used, ill-understood drugs – that is well established – but I may certainly be wrong about some details and some of my assertions.) My perception that others are thinking of me as an expert is somewhat adding to me feeling overwhelmed. It’s pressure. It’s pressure that I brought on myself, but I do ask that you keep in mind that I’m just a Floxie who is trying to put together the pieces and I don’t know all the answers.

To all of the people who are helping me – THANK YOU! Thank you to everyone who responds to comments on Floxie Hope. Thank you to all of those who take time out of their busy schedules to support fellow Floxies on the facebook support groups. Thank you to my family, friends, coworkers, allies and associates for your support. You are all appreciated!

I encourage all of you with fluoroquinolone related questions to join a facebook support group. There are lots of friendly people in the groups who can answer your questions and help you out. Here are a few of them:

Thank you for reading Floxie Hope! I hope that all who read Floxie Hope gain insight, support, understanding and, most of all, HOPE. If you would like to support Floxie Hope, all contributions will be greatly appreciated! Click HERE to contribute to Floxie Hope. Thank you!

The connection between Gulf War Illness and Fluoroquinolone Toxicity is well accepted among “Floxies,” but the connection hasn’t been made for most of the general population, or even most of the Gulf War Veteran population. I wrote this post with the hope that the issue would be pushed in both the general and the Veteran populations.

There are definitely multiple factors at work in leading to the sickening of Gulf War Veterans. Many of the factors probably compound each other. I hope that the complexity of GWI isn’t used as an excuse to not get to the bottom of it. The Vets deserve answers. I wish that those who have officially been investigating GWI ($340 million invested into determining a cause and no resolution for the Vets) would look at Cipro. I don’t know why it hasn’t even made the list of compounding factors yet. I trust that it will soon.

Search

Two guidebooks for getting through fluoroquinolone toxicity

The Fluoroquinolone Toxicity Solution + The Floxie Food Guide:

Follow Floxie Hope

Enter your email address to follow this blog and receive notifications of new posts by email.